The story of living in spite of melanoma, metastasis, vaccines, anti-PD-1, lung removal, and stereotactic radiation. The story of life with family and friends. {Posts under ~ Sew Chaotically, Travel Chaotically, and Chaotic Cookery also housed within! A girl's gotta have fun!}

About Me

Who am I? That is a question the rest of you could probably answer better than I. I am a wife, mother, daughter, sister, friend, pediatric nurse practitioner, cook, teacher, gardener, lover of words and music, occasional seamstress, and homemaker. I do have a couple of talents of questionable merit: I can create a decent meal in less than 30 minutes. I can feed and/or soothe almost any baby. And I can remember practically any song I've ever heard. For the rest, I'd rather those who know me decide.

Saturday, August 29, 2015

What to say and do....and NOT!!...for a cancer FRIEND (not patient)!

I have been asked about this a few times....and thought about it a LOT!!! I don't think any one person can speak for everyone, nor be an expert on what any other person would like, feel or think....but here are my thoughts:

Do NOT ask: "How are you feeling?" Sounds benign, right? IT ISN'T!!!! The answer you will most likely be given is, "Fine." And once you hear that, you haven't really learned anything, have you? The truth is far more likely to be, "Like utter shit, left out on a hot day, to steam into a lovely confluence of horror filled with flies!!!" OR.... "Frightened out of my mind. I don't know what to do. I don't know what is going to happen to me, my family, or my life. I feel literally scared to death, except cancer will probably kill me first!" Now...if you were to get either of those HONEST answers....what are you going to do with that? Better to be real and specific. If you are, you will get a more meaningful answer and show you really do care. Examples: "Is your surgery site causing you too much pain?" "Have you had any bad flares of your arthralgias?" Keep it pertinent to what your cancer FRIEND (NOT cancer PATIENT) has already told you. And, whatever they answer.... If negative, meaning they are still experiencing pain or other difficulties....say, "Oh, I am so sorry." If they are feeling better...say, "Oh, I am glad!!" Either way: MEAN IT! BEST: If you really want to know how your friend is feeling emotionally, ask that...specifically! "Are you feeling afraid?" "What is worrying you the most?" Expect that they may not answer....because they may feel that to admit fear or negative thoughts would frighten you or indicate weakness. But, they may give you an answer that will hurt your heart. Whatever it is, you can not fix it! You CAN hold their hand and let them say it.

Do NOT say: "Have you tried prayer? ...more vegetables? ....this diet? ...that cream?" All of those options are highly unlikely to cure your friend's cancer and imply that they either did something wrong or inadequately to get cancer in the first place or are not doing the right things to get rid of it now!!! Better: Ask what your friend has been advised by their doctor or where they are in their workup process. This way, you seem interested, in tune, and can learn how to help your friend by understanding where they are in the madness that is cancer treatment.

Do NOT say:"It could be worse." Well maybe so, but seriously???????

Do NOT say: "I know just how you feel." No you don't. Even if you have had cancer yourself. You DO NOT know how your cancer friend feels!

Do NOT say: "Think positive..." OR: "Put your faith in God...." "....and you'll be fine." If you are saying these things to your friend...they were probably already a positive believer. They still got cancer. Their faith and positivity did not protect them. Further, amazing folks with the most positive spirits and trust in God die of cancer everyday. I know, you mean well...don't know what else to say...and your friend probably will, too....but I'm telling you what they are thinking...so, just DON'T!

When you are lucky enough to coax your cancer friend to tell you their treatment plans or options.... Do NOT say: "Oh goodness! I just don't understand that stuff!" Never, never, say that. EVER! Because, about 10 minutes ago, your friend probably didn't "understand that stuff" either!!!! If you really care, you can learn! The Internet is an amazing tool and you CAN learn what you need to help your friend. My sister, Ruthie, I learned sometime after the fact, sat with a medical dictionary when she first learned of my diagnosis and treatment options until the things she read, or that I sent her, made sense. If you really don't think you can learn or understand what your friend is sharing with you....keep it to yourself! Say instead: "You are so amazing! Dealing with all of this and working so hard to learn all this new information. I am impressed." Better: Do your homework. If your friend can learn what they need to, so can you. EVEN better: Some cancer friends really do NOT understand their diagnosis and treatment options. HELP THEM!!!! Find resources and support groups. Learn what you need to yourself and share with your friend. Go to doctor appointments with them to help them listen, understand, and remember what was said. When you are the patient - emotions and pain and fear make comprehension and the ability to remember all that the doctor said very difficult. Even with fairly good health and my background in medicine, I had trouble keeping it all straight! Not having B or Ruthie there to help me at appointments would have left me very confused!

Do NOT say: "You don't look sick." While that may seem nice, it is also very strange to hear (and even see in the mirror) when you are dealing with a cancer diagnosis. If your friend thinks you are a nice person, deep down, they will think you just aren't thinking and are trying to give them a compliment. Else wise, they are going to think you are not appreciating their reality at all! BETTER: "You look pretty (handsome) today." Because when your cancer friend really doesn't LOOK sick, they still FEEL that they are damaged goods. Their body probably has scars that they do NOT think are lovely, even if YOU and the world in general can't see them. They know aberrant cells may well be running rampant in their body and that is NOT the picture of health!

My best advice for you to help your cancer friend:

Listen. Yep. Just be quiet, hold their hand, and LISTEN!

Give a hug. An easy way to say a lot of nice stuff without having to speak at all!

Make plans for fun stuff THEY like. Friend likes to garden, but is too sick and tired to do it themselves? Pull up a chair in the shade and have them watch, supervise, and chat while YOU do the weeding. Friend likes to read? Read to them. Scary thoughts, pain killers, pain itself, can make focusing on the written word hard for even the most ardent reader. Trust me, I thought after all my many surgeries..."Well...I'll just catch up on my reading." Nope. Not an option like I thought it would be...but almost all readers love to HEAR the words, even when we are not feeling our best. Friend is a movie fanatic? Rent a movie, bring popcorn, a comfy blanket and curl up on the couch with them and their favorite flic. See????

Help! Really, actually help. Double a recipe when you are cooking your own dinner and bring it over ready to eat or freeze for later. When at the grocery, call and say...."I'm already here, the strawberries look nice. What else can I pick up for you?" Mow their grass. Clean their house. If you can afford it, hire a maid service for them. Arrange to take their kids to soccer practice, dance, or just to the park. Parents with cancer feel like the biggest schmucks ever. IS there a bigger burden to put on your kid? NO! Help them out. Help them keep the lives of their kids as normal as possible. THAT'S what they want....believe me!

Find the fun. This one is not easy. And you have to take the lead from your cancer friend. But, when you can laugh with your friend, you have really done something. Laughing at the crazy nuts you deal with in cancer care is essential. The circumstances are often demeaning and ludicrous. If you make your friend smile, you have given a gift that is unparalleled. I still smile when I remember the pic a friend and fellow nurse of mine (Loooove you, Tammy B!!!) sent me of herself ON the potty (No! I saw no parts, but I knew the room, the wall paper, the level of her head) while at work when I was getting injections and infusions miles away! Not saying that would be the best thing to send to YOUR friend, but it worked for me!!!

Find a code, an inside joke or story....that builds camaraderie around what is now part of you AND your friend. You know how close friends and family have stories about..."That time when....." You know what I mean? How when you have spent time and love and laughter with a dear one...you can just say one word...with a little look...and the whole story is clear...and you will both break into laughter or tears? Well, the cancer experience needs that, too. It is hard to predict how it will come about...but use it once it's there!

In my life and then cancer story, the issue of "HOPE" was a big deal. Rosie used it via the dragonfly, the last thing to escape Pandora's box...hope flies on dragonfly wings...to tell and share her side of the cancer story. The dragonfly is now a touchstone, signifying hope and love, for many of those dear to me.

Brent found a sweet and touching way to deal with and mark off my treatments as they were completed, especially when he could not travel with me to get them. PIE! Frozen apple pie, that he would reheat in the oven just before I got home....carefully cutting away the appropriate amount, but leaving "1/2 DONE!" or "3/4 DONE!" as we made it though. Ruthie and I came to depend on those to light our way to progress.

Ruthie saved up stories of her week to tell me while I was getting noxious treatments....to take my mind off the pain and misery. Sometimes she even had notes! Her boys would even contribute..."Hey, Mom! Tell Aunt Celeste about....." It was wonderful.

We made up somewhat terrible names for hospital, airline, hotel, and car rental personnel. Pilling sweater woman worked check-in. Saggy booby lady was weird and worked in one of the labs. Baldy drove us nuts at car rental. Frank (I think that may have been his real name, actually) seemed afraid of us at the airline check-in. There were many more. Maybe I'm just weird, but it gave me something real...a connection of understanding....to a friend...in a surreal and rather horrible circumstance.

So....just be a friend....to your cancer friend. Be the person they already made friends with. They need that now, more than ever. And incredible thanks, to all my friends and dear ones, who continue my journey with me. Love, c

12 comments:

Hi, I have been reading your blog. Thank you for posting so much great information. I found your page from the MRF. I for what ever reason can not get signed up on there. I was wondering if you could help me please? I dont know what I am doing wrong. Lol

It's been so long I hardly remember! But it looks as though all you need to do is click the 'find support' tab...pick 'forum faq'...and in the first topic 'who can use the bulletin board' there is a link to 'create an account'. Just follow the directions from there. If that doesn't work there is a 'contact us' link at the bottom of that same page and someone should be able to help you from there. Best, c